Healthcare use and health outcomes of young people with intellectual disabilities in NSW, Australia

People with intellectual disabilities (ID), particularly young people, have been widely demonstrated to experience greater health disparities than the general population including greater utilisation of health services, poorer experience of healthcare, as well as higher mortality rates and lower life expectancies. While there is much published information indicating worse health for individuals with ID, there is limited research regarding their healthcare utilisation with associated health outcomes, compared to individuals without any mental health diagnosis. The aim of this research is to investigate healthcare use of young people (≤18 years) with ID in New South Wales (NSW), Australia and to identify barriers and facilitators impacting health service use. A mixed methods approach was used that included a population-based matched retrospective case-comparison cohort study and semi-structured interviews. The cohort study used linked birth, hospital admission and mortality data during 2005-2018 in NSW to examine healthcare utilisation of young people with ID aged ≤18 years compared to matched peers with no hospitalisation with a mental health diagnosis. The peer comparison group was matched on age, gender, and residential postcode. Six semi-structured interviews were conducted with parent/legal guardians of a young person with ID to identify common barriers and facilitators of healthcare use experienced by families in NSW. The Andersen-Gelberg framework was utilised throughout the thematic analysis process to categorise interview themes. There were 10,078 young people with ID hospitalised during the study time period. Overall, health service use was greater for young people hospitalised with ID than their matched peers across all health service measures. After adjusting for covariates, young people hospitalised with ID had an overall higher risk of hospitalisation than their matched peers (ARR 11.19; 95% Cl 10.27-12.20). From the interviews with primary caregivers of young people with ID, 11 themes and 27 subthemes regarding barriers and facilitators of health service use were identified. Key themes included health beliefs/knowledge, personal resources, community resources, and satisfaction with care. The findings of this research have implications for health professionals and policy makers as the identified barriers for health service use and differences in use for young people with ID compared to peers indicate challenges within the various levels of the health system.